Video - Panel discussion from the CLL Support Association UK Patient Meeting in Cambridge, 21st June, 2014

[HAIRBEAR_UK]

In this video from the CLLSA UK Patient Meeting in Cambridge, 21st June, 2014, Patient Advocate Andrew Schorr chairs a panel of UK patient advocates in a discussion of the important roles that advocacy can play in living with and raising awareness of less understood diseases such as CLL. From small 'a' to large 'A', the panel traces the impact of advocacy from the personal to the political and the local to the global.

youtube.com/watch?v=9882LmK...(Not working as expected?)

Kath Parson from OPAAL (Older People's Advocacy Alliance), adds her professional perspective to the experiences of CLL patient advocates Julia Kennedy and Tricia Gardom. Andrew, Julia and Tricia share their experiences in the transformation from patient to advocate and discuss what motivated them.

The panel concludes that advocacy works at a number of levels, beginning with the immense day to day benefits that sharing experiences with other patients in support groups brings to those living with CLL. From the positive impacts on the sense of isolation, fear and powerlessness that often accompanies diagnosis, grow more strategic advocacy campaigns such as lobbying for improved access to costly transformational therapies among the CLL community. Finally, the panel considers the potential benefits to the patient and clinical communities of collective individual experience on-line providing a global insight into living with CLL. All agreed that, whilst face to face support was important, staying connected online was an increasingly effective source of networked empowerment.

The panel strongly encouraged as many people living with CLL as possible to improve outcomes and raise awareness of the disease by getting involved in advocating for themselves and others

youtube.com/watch?v=SxYBcO9...(Not working as expected?)

[Calopteryx]

Fantastic stuff. Wish I'd been able to book a place. Count me in for lobbying - how do I get involved and where is the template letter?

[HAIRBEAR_UK Founder Admin]

Thanks for your reply and offer to become involved, i will connect you with the team

Nick

[Kwenda]

As of 9.45 Saturday morning June 28 the video youtu.be/9882LmKVMRc(Not working as expected?) ( Panel Discussion CLLSA ) had ONLY 78 views..

Chris reports today that we have 1100 followers on the Health Unlocked website.

It seems to me that we need to strongly encourage ALL our followers to view this video, as the information and knowledge viewed is important information for ALL of us.

Dick

[Kwenda]

I noticed when watching the video that when the question was asked of the audience ‘ Who reads the HU forum pages and uses the internet ‘ that there were a surprising large number of people who did NOT raise their hands..

Might I make the suggestion that HU has some pages or instructions for those who lack computer experience..?? Perhaps this has been done and I have not noticed it, or it is not in a sufficiently prominent place.?

Additionally does CLLSA have a printed sheet that goes out with their new diagnosed information explaining how the HU forum website works; and some basic computer knowledge or links to a place where this knowledge can be easily obtained.

Again Chris says we have 1100 followers, are they only following because they are unsure how to post messages.? ( I did notice that yesterday we had a ‘ Test ‘ posting and such tests should be encouraged and further advice offered )

Dick

[AussieNeil Administrator in reply to Kwenda]

Good suggestion. See the post which can be a play area for those uncertain how to ask a question:

healthunlocked.com/cllsuppo...